Late stage dementia – what might you expect?

What happens in late stage dementia?

You are probably dreading this part of the dementia journey because it sounds so bleak. Find out how to make late stage dementia or severe dementia a little easier on everyone

Could this be you?

The person you're caring for has been living with dementia for a long time - perhaps many years. You've both had your fair share of problems but, you’ve coped admirably well. However:

• They now need round-the-clock care
• They rarely talk or have little conversation
• They no longer recognise you or any of their nearest and dearest

The final stages of dementia can be incredibly hard for family and friends, but it's important to be realistic about what you can – or can't – cope with, and to accept any help that you're offered. Family carers are often under a great deal of strain during this part of the journey, so make sure not to neglect your own health or needs.

Four symptoms of late stage dementia

1. Increased frailty

Weight loss and other health issues, such as arthritis or a stroke, can lead the person you're caring for to become increasingly frail and less mobile. Many people with dementia also gradually lose the ability to walk – they may start shuffling or prefer to stay seated most of the time.

How to help: help: There are many useful aids that can make it a bit easier to stay mobile. If the person you care about needs help getting around, take a look at our range of sturdy walking sticks which are both practical and stylish. If more support is needed, a mobility scooter could make every day activities a little easier and provide some much-needed independence. If a wheelchair is the best option, you can choose from a range of strong, comfortable wheelchairs.

2. Total reliance on others

People with late stage dementia usually need lots of help with eating, dressing, washing and using the loo. If this becomes too much for you to cope with, you might find it's time to consider other options, such as a care home.

How to help: How to help: If you’re determined to keep caring at home, it could be useful to know more about eating and drinking aids, which can make mealtimes a bit easier to manage. Take a look at the easy eating and easy drinking ranges which contain some simple but clever ways to make eating and drinking less stressful.

3. Problems communicating

The person you care about may now have very limited verbal skills, but it's still important to allow them to talk and express themselves if they want to. You, in turn, should continue talking to them as you normally would. They may also try to communicate in other ways. For example, some people may give clues through body language or facial expressions as to how they're feeling.

How to help: If you’re concerned the person you love could be in pain or is simply unable to tell you something that might be important, try using a communication tool such as these visual assessment cards.

4. Severe memory loss

Even memories from childhood which were once so vivid may now seem hazy. The person you care for might also become increasingly disorientated. For example, believing they are newly married, or that you are their child not their partner.

How to help: Simple activities such as looking at photos can still provide comfort and enjoyment and may stir memories too. If you want to try something a little different, take a look at the Talking Photo Album.

Warning

Each person with dementia is unique and these symptoms are only a guide as to what may happen in the later stages of dementia. Don't take them too literally.

If you would prefer to consider a different approach to the dementia journey, click here.

Good to know

• There are still ways to make life more pleasant and more comfortable for your loved one by stimulating their senses. For example, try playing their favourite music, giving them a hand massage, or spraying a familiar perfume around their room.

• You aren't alone. Get support from other people who are going through something similar, either by joining a local support group or by going online and talking to someone in our online support group The Unforgettable Dementia Support Group. Go here to join now and meet some like-minded people.

Comments

19 thoughts on “Late stage dementia – what might you expect?”

My mothers 86 in January, she is becoming increasingly frail. Her memory has got worse very quickly, she doesn't know some family members etc., she thinks I live round the corner from her, I did so up to 9years ago. Very confused! When I talk to her of her childhood and mine 1950s she interacts. I receive phone calls can be up to 6 times in short space of time, she has no memory of speaking to me! My heart is broken I am 63 disabled not in good health! I have two sisters both in early 50s estranged, they do not communicate with me. My cousin in London relays info to me and I report to her if I have concerns. I visit my mum twice a week and take a meal for her. I need help!! Anne

We're really sorry to hear of your difficulties. Unforgettable has been setup by people who have first-hand experience in caring for people living with dementia and we fully empathise with how challenging it can be. The important thing to remember is that you are not alone.

The Unforgettable advice centre has a wide range of articles about dementia and memory loss, its causes and treatments, and advice to help you cope with the challenges. You can visit the advice centre of our website by clicking here.

We have put together a number of products on our site that can help support loved ones living with dementia. You can view products that are specifically aimed at helping those affected by memory loss by clicking here. You can also browse our many other products designed to assist people living with dementia by clicking here.

For further advice and support, you can contact The Alzheimers Society (0300 222 11 22) for 24 hour support and Admiral
Nurses (0800 888 6678) to speak with a qualified dementia nurse. Please click on the name of the charity for further information and contact details.

I trust that the above information is helpful. Please do not hesitate to contact us if you require any further assistance.

Late stage requires and step change in care. It is so important to ensure the carers are looking after themselves and getting respite. Quality time away from the person living with Dementia is essential and one of our recommendations is to live in the now.
Each smile and laugh is important for its own sake.
Families love to see people living with dementia laugh with our care Providers. www.seniorshelpingseniors.co.uk our mission is to support being well in later years, that means supporting families and friends as well.

My father is just moving in to late stage dementia. He does not recognize any of his 8 children or their spouses, nor does he recognize any of his 23 grandchildren and neither of his two great grandchildren. It is unknown to me if his only living sister has visited him recently. I know my mom has visited but not regularly since they divorced shortly before the first time my dad passed away. Side note: he has died three time and has been too stubborn to stay dead each time. The first time, the death certificate was filled out and signed and ready to be filed. But, alas, dad decided he wanted more time here on earth to taunt and torture, in a loving way, his ever growing family. Well, this time, it appears the end is near and I am not sure how much more he has up his sleeve to trick the doctors or if he even wants to trick them. I believe he has finally decide to go and live in the great community of heaven. He is ready to find out what happened 19 years ago when he died and was told not yet. And what happened 5 years later when that valve was supposed to quit working and kill him.

Anyway, does anyone have advice for adult children that live hundreds of miles away and cannot visit and see him regularly. I can try to rearrange my schedule to get a very short visit every other week but no guarantee with that. I want to see him and be involved but it is hard with my young granddaughter in tow everywhere I go.

Any advice would be great. I live my dad and don't want him to suffer!

Hi Charlotte - Thank you for your message .
I can appreciate that it must be very difficult for you being so far away from your Dad.
I have an article which you may be interested in reading here https://www.unforgettable.org/blog/my-fathers-dementia-story-i-just-want-to-jump-on-a-plane-and-be-close-to-him

It is about a daughter who was in a very similar situation, in terms of being far away from her Dad when he was diagnosed with dementia.

The important thing to remember is that you are not alone, there is a lot of support out there for you, including the organisation Dementia UK, which can provide you with more support and expert knowledge which will help you support your Dad. You can find them here https://www.dementiauk.org/

I hope this is useful, please don't hesitate to get in touch with us in the future.

My mother died this february 2018 from Dementia. She was 75. The last time that I saw her, I visited her in the hospital with my daughter. My brother and sisters were there. When she looked at my daughter, her face lit up and she smiled. I don't think that she even recognized me, her OWN daughter. I combed her hair and sang to her. I knew that she was in pain and the last thing I heard her say was "medicine". Did my mother know we were there? Do people with Dementia have awareness of anything?

My mother who is nearly 75 has had frontal temporal lobe with vascular for 3 years now. She had a series of falls early last year through contracting numerous uti’s. In the end after 4 carers a day not being able to cope and the worry of the falls( police had to be called once to break the door down, as she had attempted to get up at night and fallen over, not found till the next morning) she went into emergency care home. She’s now in a residential care home close to me, she has rapidly declined and us now on antipsychotics and low dose antibiotics, alongside her antidepressants and sleeping tablets. She is doubly incontinent. I went to see her today and she was very vacant, bearly any conversation. Not eating her tea (cake and pudding still left untouched) and had a mouthful of food that I had to mention to her to swallow 3 times. I mentioned my concern to the cadres but they seem unaware of the change in her, is this because where she is is just a residential home and they would not recognise or be versed in her type of dementia and it’s progression? I am pursuing getting a chc done as it’s never been done and I want to make sure she’s in the right place. Any advice would be good.

Here in the USA we have an org called http://www.theaftd.org/ that might have info about this situation. That sounds pretty serious to me as she could choke and/or start losing weight or becoming anemic. Hope you get it sorted soon.

Why not mover her in with you? Did you know they make emergency alert buttons ehere if someone falls tehy can just hit a button, another option would have been for a internet camera in her home so you could see her. You can even use an app on your iphone to see her home anytime, seems a little late for you now but if anyone is reading this i have come up with lots of ideas to help me in that situation

Rolls Royce, Pretty sure that these things would have been looked at as people are assessed prior to going into aged care. And for government assistance with aged related dementia and care. There are tests, geriatrician assessments, it’s not like you can just think, ok I’ve had enough I’m putting my parent into care. It does not happen that way. I did everything you’ve mentioned for my own father, and he needed 24 hr care. I’m pretty sure no one wants aged care for their parents. It’s a 24 hour job looking after someone with dementia related illness and it gets worse. Quickly. Too dangerous to leave them at home. My father wouldn’t press his emergency amulet after numerous falls. It’s best in aged care in a good home where they get the correct care and medical attention. It’s cruel to leave them at home when they are not coping and having accidents all of the time.

You wrote you couldnt help your parents because "It’s a 24 hour job looking after someone with dementia related illness..," So what!...A little baby requires 24 hour care and millions and millions of mothers and fathers watch there baby 24 hours. Did you know in a lot of countries its customary for the the adult children to watch the aged parents? You also wrote " It’s cruel to leave them at home when they are not coping and having accidents all of the time." You have to find out WHY they rae having accidents, do they have a UTI? If so, its easily treated with antibiotics. Is it because the medicine they are on is making them drowsy? Change there meds!

No you are wrong. My father is at end stages of dementia, almost Pallative, needing 24 hour care, can’t walk, is in nappies, and is blind. He’s seen every specialist, and he Asked if he could go into aged care! He did not want to stay at home as it was too hard for him, nor did he want to live with family, he wanted to be with other people his own age. I see him every day but he needs 24 hour medical attention, he has Physio, every day, nurses tending to him 24 hours and is often on a drip. He has other health issues with eyesight (nearly blind) and a heart issue as well as copd. I did everything possible. He needs machines to lift him to move. You do not know you are alive until you’ve whitnessed everything I’ve seen in the past 5 years. And for your information, my mother died of pancreatic cancer 5 years ago and we had nurses and at home Pallative care, and we tried at home care for dad, I was told if I left him home in this state for much longer he would die.

Rolls Royse are you a parent or the loved one of some one who is dealing with someone in this situation? I am a mother of to and yes a baby or child requires a lot of attention yet still you are not with your child the entire 24 hours of the day, that is when child care or help from a family come in, may you be at work, or school, or just simply to run errands. And as far as someone with dementia my grandpa has dementia and I am here to tell you from personal experience that it is not easy dealing with someone when there are in a irrational state of mind or even when their memory isn't where it should be. It takes special training and patience to deal with a person like that. As far as meds they only work temporarily. We had to make the decison to send my grandpa to a home not because we WANTED to but because we HAD to. He had become so hostile towards my grandma that we could not leave him alone with her. The point i;m making is dealing with dementia is not an easy thing for the patient or the loved one.

Mariah...If your baby got disabled and sick and required 24 hour care and all your family and friends were busy, what would you do mother of two???????????? I have a feeling you would make it work even though it wouldn't be easy. Life is not easy Mariah and sometimes life is very hard but you do the right thing with your child. All im saying is if there were no care homes i have a feeling you would have made it work although it would have not be easy. Many time i have heard you say the word not "easy" So many people want to take easy street and it really bothers me because your parents changed your dirty diaper, your parents paid thousands and thousands of dollars for your food and your care when you was a child even when it wasnt "easy", cant you do the same? Stop thinking how "easy" it would be just to throw them in a care home and do the right thing!